Anyone had adverse effects from Jakafi (ruxolitinib) for PV?

Posted by mcvorbs @mcvorbs, Nov 15 9:07am

I am 74 years old, female. Three years ago diagnosed with PV After five phlebotomies I was told my platelets were too high to continue. Hematologist offered hydroxy…..I read about it and determined to self manage for as long as I oils keep numbers down.
I have fatigue and tiredness so have begun nappping on a daily basis. Makes me feel much better. Occasional headaches for which I take aspirin. I am now being pursued to take JakaFi for the high red and white cells. Again, upon exploring the side effects, I’m a bit hesitant in trying it. HAS ANYONE WITH PV TAKEN JAKAFI? Any side effects, comments to share. Thank you.

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alive | @alive | Nov 16 5:19am

I have been on Jakafi for 3 years for GVHD (I had AML and a stem cell transplant). I have tolerated the medication very well. In the beginning my red blood cell count dropped quite a bit, so I had to be monitored and had regular blood draws. That has stabilized and I see a lot of good progress in controlling my GVHD. I understand that each person reacts differently to Jakafi. I know that some patients have to stop Jakafi because their blood cell count dropped too much. I definitely recommend to give it a try and see if it works for you.

mcvorbs | @mcvorbs | Nov 16 8:49am

Thank you for your comments. My RBC, WBC, and platelets are at the top of the range, so my understanding it will take a few months to get them down to an acceptable range. I have digestive issues that may be related to the enlarged spleen….I was informed that .the medication should help that also. I will have one additional CBC to confirm the blood levels and then determine weather to pursue the JakaFi.

I appreciate any comments. They are helpful and calm my heart!
M

pamdg | @pamdg | Nov 16 10:24am

I have been taking 5ml Jakafi twice a day for three years. It has been a life changer for PV side effects such as fatigue and optical migraines.

mcvorbs | @mcvorbs | Nov 16 11:22am

Thank you for the info on side effects. Did you have either prior to taking the med? I have fatigue and occasional ocular migraines.
10 mg twice a day suggested for me. Good to know I could get 5mg.
Thsnk you again! I’m beginning to feel better about taking it! God bless you all!!

Colleen Young, Connect Director | @colleenyoung | Nov 23 1:56pm

In reply to @mcvorbs "Thank you for the info on side effects. Did you have either prior to taking the..." + (show)

@mcvorbs, you might also be interested in these related discussions:
- What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV)?
https://connect.mayoclinic.org/discussion/polycemia-vera/
- Has anyone had experience with Jakafi?
https://connect.mayoclinic.org/discussion/has-anyone-had-experience-with-jakafi/
Did you decide to start treatment with Jakafi (ruxolitinib)?

beebo | @beebo | Nov 24 11:38pm

I have been on hydroxyurea for 3+ years following my diagnosis of PV. It has been doing a pretty good job of controlling my numbers and I have not had to have a phlebotomy in almost 2 years now. We played with the dosage for a while and ended up with 4x week at 500mg. My doctor much prefers this med to Jakafi and so far I have never had any noticeable side effects.

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